Our family's journey with autism and Soma RPM (Rapid Prompting Method) and learning all about our son, Ryan, after unlocking his voice through a letter board after 8 years of silence.

An Emergency and Disappointment

This is the hardest post that we have ever written. When you make your life public as we do on this blog, and things don’t go as planned, an explanation is needed. We did not make it to Canada to see Ryan’s friends.

On Friday, while Ryan, Grace, and I were being checked by the TSA Agent in the front of the security line, Ryan had a seizure which lasted from its onset about 8 minutes. It was the scariest moment of my life.

The DFW Airport Medics got there right after it ended and brought Ryan, Grace, and me to the ER via ambulance. Randy had arrived back at the airport about the same time as the medics and he followed us to the hospital.

The doctors and staff were very kind to us. Ryan was still in a postictal state and they ran some blood work and took vitals. The ER Neurologist asked me about Ryan’s eyes during the seizure. Because they began pointing to the left, he believes that the onset was a focal seizure that began in the right side of the brain.

Granny came to the hospital to pick up Grace for the day. Grace was amazing. I am still worried about her as she witnessed it but she did say that she did not watch all of it. She was (and still is) very worried about her brother.

We were discharged around 11:45 am. I asked him if he was ready to go home. CAN I GO TO THE BATHROOM FIRST? Which he did and Ryan was able to walk without assistance from me. Ryan was then able to spell THANK YOU. ARE YOU GOOD, MOM?

I don’t know how I am so blessed with a child who thinks of others first. I gave him a hard time because I told him that I am supposed to be worried about him, not the other way around. On the way out, I asked him if he knew what had happened and if he wanted me to explain it.

DEARLY HARD TO REMEMBER. CAN YOU EXPLAIN IT?

Meanwhile, I was marveling at how precise his spelling is as sometimes it is a bit sloppy but he was so deliberate and precise with what he was saying in the parking garage.

I asked him if he wanted me to sit in the back with him.

NO I AM FINE MOM.

I told him what had happened while Randy drove us home.

Later that day, Ryan was still very tired and he slept most of the day. He fell asleep early that night and unfortunately awoke at 4:15 am on Saturday.

We had a low key day on Saturday. My friend Daisy, whose son Diego uses RPM to communicate, offered to pick up Grace so that she could play with her daughter Sofia (she and Grace are friends too). I owe her a big thank you as that was so helpful as it really took Grace’s mind off of things.

I wrote an RPM lesson for Ryan about seizures. I am of the opinion that knowledge is power and that he should be aware of the medical issues that he has. It was a long lesson and we got through half of it on Saturday before he spelled CAN WE FINISH IT LATER? I honored his request as I didn’t want to push him to hard. He did spell REALLY SOUNDS SCARY during it too.

On Sunday, we took the kids to the Fort Worth Zoo. We had a great time, but I was nervous about Ryan. He had gotten up at 4:15 am again that morning and he was tired.

After the zoo, we made it to 5pm Mass. After Ryan received Communion, I asked him (as I always do) if he wanted to pray together or in his head. He replied CAN WE PRAY TOGETHER? LIKE TO PRAY FOR NO MORE SEIZURES.

Why did I share all of this on the blog? Because we want to help others. I was not prepared for this, but looking back, I did most things right (held his head while he was on his side, kept objects out of his way). Because Ryan had a clear EEG 6 months ago, I really did not think that this would be our reality. I want others to know that 24 hours is just a snapshot and even though there was no epileptic activity on that particular EEG, it does not mean that your child may not have a seizure (or have seizure related activity at another time).

There is no way to be sure why this happened. Some factors may have been lack of sleep (he had to get up at 4:30 am to catch our flight) or hormones associated with starting puberty. I now wonder if Ryan may have had some small seizures that I dismissed as balance issues or odd behaviors.

Friday and into Saturday, I could not look at Ryan without crying. He of course noticed this.

BALLING (Bawling–I correct him all the time on this but I think that he just likes to spell it this way) IN SEEING YOU SO UPSET.

I promised him that I would try very hard not to cry in front of him again.

There are many people who I would like to personally thank for helping us that day and I am not sure that it will be possible.

In the midst of what was happening, I did think to have a stranger video the incident for the doctors. To that kind woman, if by any chance that you see this, thank you so much for doing this, for calling Randy, and for talking to Grace.

To the nurse who helped me by checking Ryan’s pupils and staying with me and reassuring me, thank you.

To the DFW Airport – EMS Division, thank you so much for helping us. You took great care of Ryan and helped to calm me down. Thank you for taking care of Grace too.

To American Airlines, thank you for cancelling our tickets and holding our bags so that they did not go to Canada. Thank you for taking into account our situation and allowing us to reschedule our flight when we feel comfortable doing so.

To Avis, thank you for refunding us for the rental car and waiving the penalty.

To Crowne Plaza Kitchener-Waterloo, ON, thank you for not charging us for our stay. We would have loved to be staying with you now and we promise to do so when we are able to.

To the strangers in line who prayed for Ryan (including the family that reached out to us after Ryan’s story aired again on Sunday night and recognized him), thank you from the bottom of my heart.

Missing the Canada trip was heartbreaking. To say that we are disappointed is the understatement of the year. This was what Ryan wanted to do for his birthday. Fox and his family and Brayden and his family are obviously disappointed too. Ryan spelled on Saturday: SOMETHING IS ON MY MIND. BOUND TO BE SAD ABOUT MY FRIENDS.

The important thing is that Ryan is okay and that we will be able to reschedule the trip (it will be a lot colder much to my dislike) but we just have to wait a bit longer to be reunited.

On a very positive note, Ryan’s other best friend, Lawson, who lives in Arkansas and communicates via RPM, is coming into town next week so that Ryan and Lawson can celebrate their birthdays together. The two of them have been looking forward to this for a while. Lawson was understandably upset about Ryan, so his wonderful mom Leslie used our RPM seizure lesson with him so that he would understand it better. Lawson wrote this to Ryan after the lesson.

And finally, speaking of last night, I will end on a wonderful note. Kristin Dickerson is one of the weekend anchors for NBC 5 and she got to introduce and conclude Ryan’s piece that aired again Sunday night on the 10 pm news. I couldn’t help but grin from ear to ear when I watched and rewatched how she closed the story. Here it is.

DEARLY LOVE HER TOO.

*****

Thank you for the love, support, and prayers.

Ryan is doing fine now and will continue to advocate for autistics everywhere.

As I read this story, I was in such a panic! I am so overjoyed that he is alright now! I will be praying for him to have no more seizures. Ryan, I recorded the news story and showed my 13 year old twin sons. The story made them smile, and I hope they get to meet you some day. Mark and Margaret are dear friends of mine.

We’ve not met before. I work at NBC 5 and am so proud that our Courageous Kids program featured such an amazing young man like yourself. I am glad to hear you are feeling better and have your friend from Arkansas to celebrate your birthday. You are an inspiration to many people. Stay strong and full of faith!

I’m so sorry y’all missed a fun and looking forward trip. I’m sure that was so scary !
Glad all turned out ok after the seizure . Thank goodness it happened here in airport if it was going to. Don and I send hugs and love

I work here at NBC 5 and just want you to know how inspiring you are to so many here at our station. We are so glad to hear you are doing better this week. I hope you get to travel to Canada and wherever your heart desires in this world.

An Amazing Mom , A very Brave Little Boy, facing a difficult Life Struggle and the Kindness of Strangers gives us all a reason for Optimism! Lives built from Unimaginable Challenges… And through it all We see the Power of Love and Commitment in Lives Led ! God Bless